Update (3): I have received some wonderful... - Thyroid UK

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Update (3)

ShelWhitt
ShelWhitt

I have received some wonderful insight, knowledge and information regarding thyroid problems from fellow sufferers on here. I have also been brilliantly assisted and advised to understand my private blood test results and am beginning to realise just how widespread a mess thyroid medicine is in. I presume there are lots others on this site, who have also benefited and I now need to make some important decisions, (as you have already done) affecting my health and future; so I would love to hear how successful self medicating has been for you, whether there were any repercussions from your GP, did you find it complicated ; how long you have been practicing it and how is it working for you now. Thank you in anticipation .

89 Replies
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SeasideSusie
SeasideSusieAdministrator

ShelWitt

My GP, and the endo I saw briefly, just didn't understand about FT3. My GP was as helpful as can be considering her ignorance and did allow an over range FT4 and suppressed TSH in her bid to help me. The endo was just TSH obsessed and wanted it in range and in doing so my FT3 was at the very bottom of the range, he made me very ill but he didn't care.

Neither of them gave a thought to nutrient levels, they probably didn't know they were important.

I binned off the endo, the GP took early retirement, new GP was TSH obsessed.

After joining this forum I discovered myself that I severe Vit D deficiency, other low nutrient levels and I addressed them and now keep them optimal. I also discovered an adrenal problem and poor conversion of T4 to T3.

I self sourced T3 and take a small amount in addition to my prescribed Levo. This has given me good FT4 and FT3 levels which I have now learned where they are best for me. It means my TSH is suppressed so I do my best to avoid the conversations about that with my GP. My GP doesn't know and I have no intention of telling her, she has a totally closed mind so I know how the conversation would end up.

I do my own private testing and avoid GP tests as much as possible. I am confident with what I take and keep my FT4 and FT3 within range.

I am full of admiration for you and other like you. It is a total disgrace that in spite of years of research and I presume spending thousands of pounds we are still in this position. I can't recall whether you were part of an earlier discussion regarding Drs. Lowe and Skinner, and the work they carried out, but if so you will know where I stand on this. Furious. Particularly, when you realise that Professor Tony Weetman (Look him up) was the head of Endocrinology in Sheffield (my area) at the time. Way back then, I had been doing a bit of delving myself, as I thought it could possibly be my thyroid causing problems. I had come across the theory of inadequate conversion of F3 and thought it could well relate to me. Then came the big BUT. I discovered Prof. Weetman's involvment and realised that even if I managed to get my theory looked into at the very top, (fat chance of that anyway) and asked for it to be tested, it would be a complete waste of time, in view of his totally wrong and strongly opinionated views. I remember saying to my husband, at the time, it is no good trying to pursue this. I would be hitting a brick wall. He was in charge. Held very rigid views, rubbished anyone else with a different opinion , and as far as I could see, no one dared challenge him at all. All the local GP,'s etc. submitted to his mantra and accepted his views like sheep. It is so sad that it appears to still be going on. I know it is a stretch but have you by any chance researched how the conversion theory is perceived abroad, eg. USA, Germany, France or even China. Just a thought! Thanks again for all your help.

SeasideSusie
SeasideSusieAdministrator
in reply to ShelWhitt

I know it is a stretch but have you by any chance researched how the conversion theory is perceived abroad, eg. USA, Germany, France or even China.

No I haven't. From reading posts on the forum it seems as though some doctors in the US and Germany are about as hit and miss as doctors here. No idea about China though.

After becoming hypo in 1975 after the birth of my second baby, but it not being diagnosed until 2 years later, and being fine for about 20 years on Levo, it's only more recently that I've had to learn to help myself.

It's difficult to believe that there is such profound ignorance in the medical profession about the thyroid and how to treat it.

I was first diagnosed with Hashimoto's in the US in 2006. They get it in the US. I was put on compounded T3 and had my dosage raised gradually. T4 (levothyroxine) was added later. Living in the UK -- I find there is no awareness of RT3 or using anything put levothyroxine. I go to a private integrated physician here in the UK and get my compounded T3 from a pharmacy in Germany. My GP practice is aware of this and have not tried to interfere -- but I'm insistent.

Daffers123
Daffers123
in reply to lynnimp

Hi could you please pm me with who you see in UK to get the compounded T3

Thanks

Could you please PM also who you see in the uk for your T3 thank you

ShelWhitt
ShelWhitt
in reply to lynnimp

Hi. I am struggling with all this, although I have had lots of help and information from great people on this site. Where are you based and what is a private integrated physician (not heard of one before) may I ask? They must be better than GP's or endocrinologists if you have got satisfactory service from them, in regards to the thyroid. Lucky you, if your GP practice have accepted this, that is one of my main concerns , that if they don't agree with what I am doing I might be thrown off the list! And not to get too technical, or specific I wouldn't know where to start to obtain T3 from abroad!

My dutch friend was put straight on NDT and does very well x

What is NDT?

Natural Dessicated Thyroid x

ShelWhitt
ShelWhitt
in reply to ShelWhitt

Thank you. Apologies for my ignorance. Know nothing about that! Another quandry!

TiggyN
TiggyN
in reply to ShelWhitt

It’s as well to be aware that most of the NDTs which had been working well to get patients optimal in the U.S. have changed formulations and are now keeping people sick. Many patients now treat with Levo/Synthroid and T3, though Armour Thyroid still works for some (if any thyroid-illiterate GP can be persuaded to prescribe it). It’s important to test both antibodies (not just one, as most GPs insist on) to see if you have Hashimotos.

With absorption issues, it’s important to check levels of RT3, but you’ll need to get that test privately (Medichecks, Genova etc) because again, UK medical professionals don’t know what it is or why it’s relevant). All four iron labs are crucial too - serum iron, % saturation, ferritin and TIBC. People generally don’t get optimal on thyroid meds of any kind if their iron is wonky or their adrenals compromised.

ShelWhitt
ShelWhitt
in reply to TiggyN

Have done the blood tests and had brilliant feedback from Marz , Sunshine suzie and others. Am now deciding where to go from here. Self medicating looks good, but I don't feel too self confident and it seems to be so complicated sourcing T3, purchasing it, dosages, monitoring, etc. So also contemplating seeing GP with results and seeing if I can get dosages of various vits. etc. upgraded, to see if that helps! Onwards and upwards! Is there any light at the end of this tunnel? I certainly hope so!

TiggyN
TiggyN
in reply to ShelWhitt

There are literally hundreds of thousands on people globally (me included) living half-lives due to this horrible and under-treated disease. Many self-medicate in desperation, with varying results. If you get all your ducks in a row (nutrition, iron levels, un-stressed adrenals etc etc) it is possible to become optimal (“normal” is just a setting on the washing machine...) but it is a long road. I have two books; “Stop The Thyroid Madness” and “Hashimotos: Taming The Beast” which are my bibles and contain literally everything you need to self-treat and advocate for your own health. Both are by Janie A Bowthorpe.

ShelWhitt
ShelWhitt
in reply to TiggyN

Thank you, will look into this. Hope you are doing OK.

jheff
jheff
in reply to ShelWhitt

I take NDT is made with natural pig thyroid T4 and T3 Brand Armour thyroid and 5mg extra T3 Iiothyronine sourced from my thyroid specialist in Austin Texas and bring back to UK. I was taking this before I moved here and became unwell on T4 alone here. Generic Cytomel is inexpensive in US but it might be difficult to get without a USAddress. I get it for about 50 p a tablets and higher mg don’t cost much more.

Marz
Marz
in reply to ShelWhitt

I lived in Greece for 15 years from 2004. I was diagnosed with Hashimotos in 2005. The FT4 and FT3 were in range so would not have been diagnosed in the UK. We keep our own records in Greece ( very grown up ! ) and I started a spreadsheet of test results which in time indicated I was not converting inactive Levo into Active T3. My GP promptly gave me a prescription for T3. I added the T3 to the T4 and then went T3 only about 6 years ago.

In Greece a box of T3 is around €1.30 - same box in UK is around £250 and the NHS are being held to ransom by one company. As a result T3 has been restricted in most areas. In spite of campaigns and meetings with government nothing has changed. All based on narrow thinking and out of date research - it just suits ..

Big Pharma is richer and more powerful than many governments and too many officials have their snouts in the trough. Medicine today is a business model and we are customers - so having us well reduces turnover !

Remember I was diagnosed with Fibro back in 2000 in the UK by a Rheumatologist and I could still be sleeping for hours in the day - aching from head to toe and having all additional symptoms blamed on the Fibro. It was an irregular heartbeat that took me to the GP who promptly asked if my thyroid had been tested ? The rest is history - and so my journey began.

I joined this Forum in 2011 and over the years have learnt more and more from others and am still learning .... 😎

ShelWhitt
ShelWhitt
in reply to Marz

It rings so many bells! Feel as though I have been on a lifetime's journey and am about to embark on another - If I can afford it? £250 how frequently is that!

Marz
Marz
in reply to ShelWhitt

I have not had the test ...

Koola
Koola
in reply to Marz

Hi Marz, when I read that you lived in Greece, I was just wondering if Greek T3 might not be as good as other ones. I was told by my endo that batches vary. Have you noticed a difference between brands?

Also, would you mind telling me what prompted you to go on T3 only? I'm currently on 75 mcg T4 Tirosint (recently upped from 63) and take a quarter of a 25mcg T3 tablet a day. I still feel miserable or better said: worse! (more exhaustion and now tachycardia...)

P,S. I forgot to mention that I live in Greece. And that I finally found an endo who agreed with T3. Though he recently told me to take less, i.e. every 2 days, to which two members of this panel commented that every 2 days don't work , in other words that it was BS :) (not funny but I do enough crying as is...!)

Marz
Marz
in reply to Koola

I kept a spreadsheet of results which indicated I was not converting. Showed my GP and she gave me a script for T3.

Am now UK based and using Tiromel - and think I prefer Greek T3 ..

I do not agree with alternating the dose. What was your FT3 result before you started taking it ?

Where are you in Greece ?

Koola
Koola
in reply to Marz

FT3 was low before: 1,60 /range: 2.0- 4.2 . Then next labs was 2,06.

Since then going up steadily and now it’s too high: 5,5 / range: 1,8 – 4,5. My TSH is too high as well.

I live on a small Greek island so I’d rather pm you exact location … ;) :)

Marz
Marz
in reply to Koola

Of course - feel free to PM .

greygoose
greygoose
in reply to ShelWhitt

In France, it's a mixed bag. Some doctors will prescribe T3 if you ask, others won't. But, the majority of those prescribing it have no idea what it is or why you need it. I first got hold of T3 from an endo in Paris. He said: 'you can have it if you like, but it won't do you any good'!!! Ignorance is rife.

Nellups
Nellups
in reply to greygoose

When I lived in France I asked my Endo about T3, she stated it was a stupid American craze, not needed , T4 was enough to convert T 3 correctly end of !

greygoose
greygoose
in reply to Nellups

lol I asked my first endo if there was anything other than levo I could take because it didn't agree with me. She said, no, there was nothing else, levo was all there was. I still can't make up my mind if she was lying, or just very ignorant. And she was a teacher in a teaching hospital!

I am sorry I dont know the position in these countries either but interestingly my endo recently suggested I might explore TCM to help with thyroid related issues and other AI conditions. He is ambivalent I think about the “party line” recognising that its not enough but not able to make a complete move to alternative views. He knows I buy T3 and is willing to not inform my GP. He says other patients of his have benefitted from TCM.

Showing my ignorance, yet again. What is TCM and Al?

Sorry! Traditional Chinese Medicine and autoimmune conditions.

Just spotted something else on here. What on earth is a D102 test. It is like falling down a bottomless pit!

SeasideSusie
SeasideSusieAdministrator
in reply to ShelWhitt

SlowDragon is the one to help there, she has experience of this. It's to do with inheriting a gene from one or both parents which inhibits the conversion of T4 to T3 (my extremely brief explanation!)

SlowDragon
SlowDragonAdministrator
in reply to ShelWhitt

There are quite a few DNA issues that affect/exacerbate treatment of thyroid patients

DiO2 is the one currently most recognised by limited (but growing) number of thyroid specialists

About 10-20% of thyroid patients would appear to have this relatively common DNA variation

thyroiduk.org/tuk/testing/D...

Firstly, you need to know that everyone inherits two copies of each gene, one from their mother and one from their father.

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

It turns out, that many of us “difficult” thyroid patients have this gene variation. (Not a somatization disorder as ignorantly labelled by one medic)

Vast majority of patients still have to do this test privately, but one enlightened endo department in Kent offers testing on NHS and prescribing T3 if test positive

Some of us have included the DIO2 test results when arguing for needing T3 and as result this has helped successfully get T3 prescribed on NHS

The research endocrinologists based in Cardiff say attitudes among endocrinologists are changing and more are open to DNA issues being considered

But obviously the ongoing ludicrous price charged to NHS for T3 is severely hindering many patients getting prescribed

thelancet.com/journals/land...

That is absolutely fascinating Slow Dragon and good to know that there is a least some movement in the right direction. If I pursue the self medicating route, where would I buy the T3 from, in what quantities, and at what cost? I am fully behind the concept but extremely nervous in case I get things wrong!

Marz
Marz
in reply to ShelWhitt

We are not allowed to post on the Forum details of T3 sources. As mentioned earlier it needs to be done by PM. Sources have been closed due to over exposure.

If you are anxious about self-medicating why not do as suggested in your previous post. Increase your Levo dose every 6-8 weeks with regular testing through your GP until your levels are optimal. Improving B12 - Folate and VitD will also aid conversion of T4 into T3. You may find this brings your T3 into range and hopefully higher ...

ShelWhitt
ShelWhitt
in reply to Marz

Another good pointer Marz. I think I might well try that for starters!

Marz
Marz
in reply to ShelWhitt

SeasideSusie has information from Professor Toft about thyroid results which may help you obtain an increased dose. You would need to print it out ... can you do that ?

ShelWhitt
ShelWhitt
in reply to Marz

Not sure. Will look into it later. Need to go now. Speak again soon!

SeasideSusie
SeasideSusieAdministrator
in reply to ShelWhitt

ShelWhitt

This is the article that Marz has mentioned:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor if struggling to get an increase in dose of Levo.

Another useful piece of information which can help if GP insists high in range TSH is "normal" so no increase is necessary. It comes from NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

Marz
Marz
in reply to ShelWhitt

Do you have a Printer ?

ShelWhitt
ShelWhitt
in reply to Marz

Yes I do!

Marz
Marz
in reply to ShelWhitt

Oh good - so you can print off the information SeasideSusie posted for you to help you have an increase in dose ..

ShelWhitt
ShelWhitt
in reply to Marz

Have already done it Marz, thanks. Not quite sure how to progess with it, however, as there's already been a mix up between GP and Sheffield Region regarding my medication. Not really quite sure who prescribes for me any more, I think things are changing but how would I know? Got a phone call around Christmas time from Sheffield Region telling me they were taking me off their books as I had not been having the required tests.(thyroid) I blew a gasket and said I had never missed any tests! Eventually came back to phone and said OK, they had found my results were on the computer! Went to see my GP and asked if I could change from Sheffield Health and go under Rotherham Hospital instead. She said something along the lines of not to do anything at the moment, as the the system was changing anyway. I do recall that the Region had always sent out packages for me to return samples in , and on a couple of occasions, our Health Centre hadn't got them. When I queried it, I was told not to worry they would sort it! And as I recall I did then get my medication changed. It was changed so often last year I lost track - with hindsight I should have kept records, but to be honest for the last 12 months I have been in no fit state to do anything other than the bare essentials! So who is now running the show is anyone's guess. I feel like I am spinning round in a tumbler dryer! Should be a calm period soon I hope!

Marz
Marz
in reply to ShelWhitt

EXCELLENT ☆☆☆

helvella
helvellaAdministrator
in reply to ShelWhitt

For clarity, the gene that affects T4 to T3 conversion is called DIO2 - that is, three letters and a number. Not D102 - a letter and three numbers. Not DI02 - two letters and two numbers.

The name comes from the enzyme that this gene affects which is a deiodinase. It removes an iodine atom from a thyroid hormone molecule - it deiodinates it.

On this forum we probably understand, but if you wish to look it up anywhere, it might help to get it right. If you are discussing with a doctor, and get it wrong, you are providing an excuse for them to dismiss what you say.

(More strictly, two single-nucleotide polymorphisms (SNPs) on the DIO2 gene, rs225014 and rs225015.)

academic.oup.com/jcem/artic...

The Wiki article provides a basic introduction as to what a single-nucleotide polymorphism (SNP) is and why it can be important:

en.wikipedia.org/wiki/Singl...

SeasideSusie It's Sad . Very Sad. You would think Dr's would learn by now ???? But that's the way to go to feel Well .We must take matters in our own hands if we can not get the proper care we need . We just have no choice .

We are our Own Best Advocates.

Can I please ask where from and what brand of T3 you get?

SeasideSusie
SeasideSusieAdministrator
in reply to Biddy51

You need to make a new post on the forum asking for members to recommend a source of supply by private message. Members are more likely to respond if you post your latest test results for TSH, FT4, FT3, Vit D, B12, Folate and Ferritin.

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Are you getting a private prescription for your T3 and T4 ? If not how do you mange to get them?

I told my GP that I thought NHS treatment of the thyroid was inadequate and sadistic and I would test and treat myself. She raised her eyebrows at my comment but the subject has never been mentioned again. I've refused to have thyroid function tests done by the NHS for about 7 years now, I think.

Please please explain to me what all this means. I take 125 levo a day. Under active thyroid. What does the FT4 ect mean ? X

SeasideSusie
SeasideSusieAdministrator
in reply to Mammaelf

Mamaelf

Welcome to the forum.

Presumably because you've made no posts on this forum you are well on your dose of Levo.

When you have a thyroid function test, they will test TSH (Thyroid Stimulating Hormone) which is a signal from the pituitary to tell the thyroid to make hormone if it detects the level is too low.

Levo is synthetic T4. Your thyroid function test may include Free T4 (FT4) which measures the amount of T4 in your blood at the time of the test. T4 is a storage hormone which converts to T3 which is the active hormone which every cell in our bodies need.

Your thyroid function test may also include Free T3 (FT3) which measures the T3 in the blood at the time of the test. This is the most important test which, unfortunately, doctors don't seem to understand. This is the test that tells us if our bodies convert T4 to T3 well enough. If T3 is low, this is what causes symptoms, and FT3 over range suggests that we are taking too much thyroid replacement hormone.

Have a look around ThyroidUK's main website (this is their forum) and if you have any questions then start a new thread and members will do their best to answer:

thyroiduk.org/tuk/about_the...

Work your way down the purple menu on the left hand side.

SlowDragon
SlowDragonAdministrator
in reply to Mammaelf

See you posted on PAS unlocked and have very low B12

For levothyroxine to work well we need GOOD levels of B12, folate, ferritin and vitamin D

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Many people need to supplement virtually continuously to maintain optimal vitamin levels

Suggest you get hold of your recent test results and come back with new post asking members advice on next steps

do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Just testing TSH and Ft4 is completely inadequate

If I have confused you by posting different results at different times, I can only apologise, I am not brilliant at technology and keep making gaffes.! I have had the private tests done, posted the results and had feedback from Marz and Seaside Susie. Sorry

SlowDragon
SlowDragonAdministrator
in reply to ShelWhitt

Sorry that reply was to Mammaelf

That’s why it’s best for people to put questions on their own new post

Mammaelf
Mammaelf
in reply to SlowDragon

That was really helpful actually. I’m going to scour my test results now to see if I’ve had any of those and what they were.

On a good note, I now self inject B12, and it’s sooooo very easy. My mouth ulcers and sore mouth have all but gone 🙂

SlowDragon
SlowDragonAdministrator
in reply to ShelWhitt

But would ALWAYS Recommend getting full thyroid and vitamin testing privately via Medichecks or Blue horizon FIRST

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamins

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Important to get all four vitamins optimal BEFORE considering adding T3

Conversion of Ft4 to Ft3 often improves substantially when vitamin levels are optimal

come back with new post once you get results

Marz
Marz
in reply to SlowDragon

Shelwitt has posted results in earlier post 🤔

I lost 5 years and £000’s looking for the right dr to prescribe the right dose of the right thyroid medication.

I have learnt a huge amount in my 20yr journey, and if I could go back I would never have taken those tablets.

Now we have a documentary series called the thyroid secret and books by Dr Isabella Wentz.

I also listened to talks yesterday about healing the thyroid naturally.

Briefly - gluten, dairy, soy free, a toxin free regime.

healthunlocked.com/thyroidu...

The member posted this update just now, to her recent post. Scroll down towards the bottom for her update ...

ShelWhitt
ShelWhitt
in reply to Marz

Just read it, so scary!

There will be so many success stories on here, but the title of your post may not alert them all to respond. When I arrived on this forum a few years ago, I was in a terrible state, despite having tried to do some research for myself. I couldn't believe that one person could possibly have all the illnesses I had been diagnosed with. ME/CFS/FM, and so many others. I also had terrible tremors and couldn't walk unaided. GP's and various specialists had always said blood results were 'normal' and everything was put down to one or other of the bogus diseases. A nightmare that continued for decades.

I had the most amazing advice from members on here [as you have] and I spent my time reading links, posts and recommended books. I took all the advice offered to me re vitamins and minerals, [and had many improvements] then when they were optimal I bought my own T3 and self medicated. The Levo had never helped me, and even though they were happy to prescribe huge doses up to 300mcg, the higher doses always made me feel worse, although I know for many people they may just need an increase of T4 and are then well. I clearly needed the T3, and it made a tremendous difference to me...my symptoms gradually diminished and disappeared. Some were instant, like the disappearance of daily migraines, which I put down to rectifying the magnesium and B12 deficiencies and the introduction of T3.

So I feel well, but I was never able to fit my wellness into the narrow thyroid ranges that the Drs insist we comply to...and that's the reason I was kept ill for so many years. My only regret is that I didn't find this out sooner, and I may not have lost so many years of my life to illness. I did have a bit of a dilemma with the GP regarding self medicating, but I just tell them I do my own tests, as they won't test for anything useful anyway. They don't know exactly how much I take however, as I imagine their collective brain would explode💥 but my own health is more important to me than their misguided opinions.

I do understand how difficult it is to get your head around all the medical propaganda we have been subjected to regarding thyroid treatment, diets, vitamins etc., but all I can tell you is that I was very disabilitated before I was helped by members on here, and I am eternally grateful to them all...they have completely changed my life, and have taught me how to keep myself healthy. Their advice was often in opposition to that of my GP and endo et al, but I can now do all the things I enjoyed before I was ill, gardening etc. I would never go back. It does cost a certain amount of money...quality vitamins and minerals are not cheap, but they are essential for good health when hypo. I also think it would be a good idea to get a test for your husband...certain vitamins get depleted as we age, and I had quite severe neurological problems from an undiagnosed vitamin B12 deficiency, amongst others. Knowledge is power...good luck🍀 x

ShelWhitt
ShelWhitt
in reply to Mamapea1

Thank you Mamapeal. What a lovely story. I am so glad you are now well! Hopefully, at some stage I will get there too!

Mamapea1
Mamapea1
in reply to ShelWhitt

I hope you do! I meant to ask what make of Levo are you on? Is it Teva or mixed makes?

ShelWhitt
ShelWhitt
in reply to Mamapea1

I am on Actavis 50 mcg every day and TEVA 25 mcg every other day! Do you think that could have any impact?

Mamapea1
Mamapea1
in reply to ShelWhitt

Ah yes I wondered if the 25mcg was Teva. Well Teva made me particularly ill, and although some members are ok with it, many others have had problems with it. You obviously don't need your meds to be lactose free, but I believe it's the only one that they prescribe that comes in 25mcg, so that's why you've got it. As you are clearly hypo anyway at the moment, then maybe when you get your increase, you could request that the pharmacy don't give you Teva. Or you could get a pill splitter and cut a 50mcg of Actavis in half. You really should be on a higher dose though ASAP though. It's also not really advisable to mix different brands of thyroid meds. x

ShelWhitt
ShelWhitt
in reply to Mamapea1

Thank you so much for that information. Wouldn't you think the GP's would be aware of all this. I am starting to get a little scared to go and see my GP. I have always got on OK with her. She does seem to know what she is about - bearing in mind her take on this is - it is fibromyalgia causing the problems, not my thyroid! I have already asked for blood results and medical records. Also , she has done me a referral letter to a private endocrinologist (which I haven't taken up, yet, at least) because I have been waiting for the more extensive bloods, and feedback from this site. This is becoming almost like a full time job - and unfortunately I have a lot of other stuff that I have to attend to. If I was fit , didn't have brain fog and an ill husband to look after, perhaps I wouldn't feel so daunted all the time!

Mamapea1
Mamapea1
in reply to ShelWhitt

No I don't think they do know any of it now...my GP was always very pleasant to me, hence I believed her. That all changed when I read my medical notes and read what she had written about me ~ the under range vitamin and abnormal thyroid results didn't help either! She in turn wasn't too happy about me not needing my numerous prescriptions for the illnesses I didn't have...you'd have thought she'd have been pleased for me, but she was obviously more concerned about loss of revenue, or pride? ...I can't think of anything else.

Despite all my improvements and being signed off from the various hospital 'specialists', she still won't accept that it's down to thyroid meds😕 I went there for 22 years...I go somewhere else now as she has closed the surgery, although I haven't been to the new one yet, so I don't even know who my actual GP is.

If I were you, I would request an increase in Levo first, based on your recent Medichecks, and if you're no better after that...source your own T3 and take advice from knowledgeable members about dosage. You may only need a small amount, if any. You are unlikely to obtain T3 through the NHS as they have been told not to prescribe due to artificially inflated costs. It will just cause lots of stress and conflict, which will make you even more ill. So don't go overboard and ask for T3 etc initially...just get your vits and minerals optimal yourself with good quality supplements as advised on here, and politely ask for an increase in Levo, with no Teva. That would be a good start in the right direction👍 x

ShelWhitt
ShelWhitt
in reply to Mamapea1

Thank you so much Mamapeal. I think that is good advice .I am finally getting my requested medical notes on Mon/Tues, so may be I will also get a shock as to what I discover.. That could possibly alter my plan of action, but we shall see. I definitely agree with you regarding vits. minerals, increase in Levo and no Teva.

ShelWhitt
ShelWhitt
in reply to Mamapea1

I think you are right though.. I probably should have opened another post for people to respond.

Mammaelf
Mammaelf
in reply to Mamapea1

I’m sooooo confused ! Like you I was diagnosed with ME/CFS/FM. Had many many bloods done and the gps all said yes, they are normal.

Then last year I became very very poorly. Infection and infection. Many courses of steroids and antibiotics. ENT, Rhematology, Lung specialist and now Immunology. So much money on private consultants.

Arguments with GP about my results as they are all borderline. Ie B12 200 ( which is lowest end normal on nhs).

I take 100 levo and 25 every other day.

What shall I ask to be checked for my thyroid?

Ps I self inject B12 now and purchase magnesium, and D3 from Germany x

Marz
Marz
in reply to Mammaelf

I would start a new post of your own so members can respond with support and suggestions 😎

Mamapea1
Mamapea1
in reply to Mammaelf

I personally believe the ME/CFS/FM labels are just a bucket diagnosis for a wide range of metabolic disorders that could have multiple causes. Its useful for Dr's because they can then just say 'oh yes, that's just your fibromyalgia' etc. and proceed to write numerous prescriptions without ever finding out why your body isn't functioning properly.

I was attending five different hospital specialists, [because they never look at the body as a whole] and I was offered more prescriptions for meds that any one person could possibly be expected to take...which all made me worse and had to be stopped. When I complained about the side effects of the nefarious meds, I was offered more meds to quell the symptoms caused by the first! I was getting worse with no answers, and was consistently told my results were all normal and, due to my erroneous faith in doctors, I believed them😕

I now don't take anything at all except for the vits and minerals and T3. I dose the T3 by how I feel rather than what the TSH says, as I have thyroid hormone resistance. If I were you I would do a Medichecks Thyroid Ultra Vit test, and post the results in a new post so that knowledgeable members can help. There are many things to consider when trying to resolve these issues, cortisol levels etc. My cortisol had gone very low due to a prolonged period of emotional and physiological stress. So many things can affect the conversion and absorption of thyroid hormones. My B12 was 362 (191 - 663) and I had severe deficiency symptoms because my folate had been below range for over 20 years, and I hadn't been told! I had to beg numerous times for a Vit D test as she said I couldn't possibly have a Vit D deficiency because I "looked brown"😳 my daughter 'persuaded' her to test it in the end, as I was getting bone deformities, and it was 4!😡

You need to read around the forum and learn all you can about the condition and take note of anything you think may apply to you as an individual, and post for advice. There's a lot to learn, and I had terrible brain fog in the beginning so it was hard at times, but it's essential knowledge. Especially as it seems most Drs can't be relied on to know these things. x

Mammaelf
Mammaelf
in reply to Mamapea1

This is soooo helpful. I agree with everything you have said. I’ve started making notes. Defo going to do the medi check test and take it to the immunology dept with me. I had low folate , so they gave it to me before they tested my B12 😮. Been taking 5mg everyday for a year now.

I have a lot of reading to do. Thanks for being so helpful xx

Did you open the link I posted above about the lady and her treatment or lack of ... an sure you would have responded had you had a read - it is shocking ...

ShelWhitt
ShelWhitt
in reply to Marz

Yes, I did. Sorry, thought I had replied, You are right it really is shocking

Marz
Marz
in reply to ShelWhitt

Apologies - yes you did 😥

I'm in the U.S but it's the same old story. I was on .88 mcg of Levo for 28 years and about 90% of the time I had symptoms, like cold hands & feet, low temp's, hypoglycemia, etc.

I finally crashed and talked my GP into sending me to an endo, who I have talked into, after a year of various combinations of T4 & T3, 75 mcg of T4 and 20 mcg of T3. I supplement another 25 of Levo so I'm now on 100 mcg of T4 & 22.5 of T3 and feel fine. It takes work and the truth is hard on my endo but he has taken my doses and prescribed them up until now, I save extra T3 from previous perscriptions, plus I also go to the VA and save that also.

My story is similar to SeasideSusie, except I don't source the T3 myself any more. I had a hard time finding the T3, then I felt really unwell on it....I really wonder now if they were jumping on the bandwagon and selling 2nd rate stuff to the UK. Or could that be me being so mistrustful of any one connected to the Thyroid medical profession that I'm just too cynical? So GP's seem to honestly know less than I about thyroid issues, just the basic knowledge. I was lucky enough to be sent to an amazing Endo, but he retired and the one that took his place was one of the most dreadful people I have met. My husband made me leave the consultation, I don't know what shocked me more her or his reaction. She was rude, uncaring a horror of a doc AND took the T3 away (thus my search for more) . I had however had some good advice from the good Endo, so started my private journey through all of this bloody mess. I now take Vit D, Selenium and Magnesium and have B 12 jabs..all the simple things but it appears to work . I also have a new GP who happened to be trained by the good GP, so he listens, but this has been very recent, so lets see how he pans out in the future. If I feel OK I have a GP blood test, if something isn't quite right I also have a private one, and yes I realise how lucky I am to be able to afford all this stuff, I'm sure some poor souls aren't. The original T3 turned my life around, I'm almost 70 now so I don't know how much of the aches, etc etc is because of that...so I get on with it. I have a theory that most Endo's think that Diabetes is the way to go for them, Throidism is a pain, we are a very feisty lot eventually aren't we and I LOVE that about this community, how we stick together, fight for ourselves. I wish you all all the best x

Oh! I forgot to add that I now know when to fight the exhaustion....I give in to it and have a lazy day, sleep a lot...I think that's very important to note. Very lucky if you can do this I know x

ShelWhitt
ShelWhitt
in reply to liz1952

You seem to have got things in control. Well done you! Have you managed to find a new source of T3, it seem to be a nightmare to find if you want to go down that road!

No, I've got through it without for a while now. It was awful at first, but (and it may be coincidence?) my body seems OK without it at present...fingers crossed. I really hope you get sorted soon x

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